Category Archives: Rheumatoid Arthritis

Rheumatoid Arthritis Type 1 Diabetes

Here’s your gift bag!

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My husband had dental surgery today. In addition to post op instructions, he received a gift bag. Yes, you read that correctly. A gift bag. I’ve had quite a few surgeries and other than some ace bandages and a pain medication script, I usually just end up with a bill.

The gift bag had things he would immediately need- gauze packs, instant cold pack. It also had a pen, a t-shirt, and a coupon for a free milkshake from Chick-fil-A. Whaaaaaat?! I didn’t have to run out to the store immediately to get him gauze, we had it. And a milkshake? That’s the perfect post op treat- you haven’t eaten in hours but need to get something in your system (my husband has actually taken me to get a milkshake after every one of my surgeries so we had a little laugh about that at the doctor’s office). And what about the t shirt? Yeah, I’m wearing that now- it has a clever slogan about losing your wisdom teeth. Regardless, it’s clean and comfy.

How cool would it be if after my knee surgery, I received a gift bag? With maybe a stress ball to squeeze the crap out of (or bite into) when my nerve block wears off or perhaps a whistle for calling my children to help me? And maybe one of those long grabber things so I could reach my lip balm after I drop it on the floor and can’t bend to reach it?

In all seriousness, what would be in your gift bag? And have you ever been lucky enough to receive one yourself?

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Rheumatoid Arthritis

The options are: sick or stiff?

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A little background on my RA journey- I was diagnosed in January of 2012, after several months of debilitating symptoms (like having to go down the stairs on my butt, not being able to straighten my arm).

My rheumatologist started me on methotrexate and after six months with no change, we added Humira.

Humira was amazing. I had so much energy, I could walk, and after almost a year, I could finally bend my arm. I am quite positive I was right on the cusp of remission.

Fast forward nine months. A seemingly harmless cough morphed into a nasty chest infection that took months to clear with various concoctions of antibiotics. I ended up with a permanent diagnosis of asthma.

Since my illness in 2013, I tried Orenica. I tried Enbrel. Nothing. I convinced my rheumatologist to please let me try Humira again. I did and instantly got a fungal infection, plus a sinus infection. I even had sinus surgery- desperate to get back what Humira once gave me. It was no use, I kept getting sick.

I moved on to Simponi Aria infusions in the fall of 2016 and gave them a solid nine months to work. Nothing.

It is now fall of 2017 and I’ve had my two loading doses of Rituxan. And guess what? Something! My fatigue got better right away, my stiffness is almost gone, and my pain is more manageable. But guess what?

As of today, I’m now sick for the second time in a month.

To say I’m discouraged would be a massive understatement. I have had Rheumatoid Arthritis for less than 6 years and I am already on my 5th biologic and just had my 5th surgery in June.

I feel that I have to pick between two evils: do I want to live in pain with limited mobility, while this disease attacks my organs? Or do I want to be able to bend my arm and walk down the stairs but I’ll be horribly ill and not strong enough to fight a serious infection?

In short, do I want to be stiff or sick?

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Rheumatoid Arthritis

The week I chose to live

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A few months ago I was invited to attend the ReAlTalk conference put on by Pfizer (they paid for my travel & time but that’s all, all opinions are mine). When I was invited, I knew that my heart and mind wanted to attend, but my body? That was another story.

I had and am still having a rough recovery from knee surgery and just daily life with Rheumatoid Arthritis. The thought of going to New York City was exciting yet terrifying. How much pain would I be in? Would my doctors even allow me to go? How would I travel with crutches?

Guess what? I went.

No, I didn’t through caution to the wind and say “forget you Arthritis”! Whether I like it or not, Arthritis always has a vote and if I ignore that, it will rig the election (hmm, let’s not talk about that). But I decided I would be as proactive as I could and use the tools I have- tons of KT tape, compression gear, my braces, ice, pain relief medications, and my crutches.

Between getting settled in my hotel room and our group dinner, I wore my compression socks, filled my ice bucket, and used the fantastic hotel pillows to elevate my legs. I drank a lot of water and made sure I had plenty of electrolyte replacement powder to add to my water bottle.

The next day, I opted to take the provided car to our meeting space (One World Trade, whaaaat?!) which was just a few blocks. I used instant ice packs during the meeting and accepted the offer of a footstool to keep my legs up. When returning to the hotel, I continued my RICE protocol (rest, ice, compression, elevation).

I didn’t always do as well as I could though. JFK is a gigantic airport (seriously, please learn from my experience). I knew this because I came through JFK for my flight in. I had a rough time making it from my gate to baggage claim on Tuesday so you would think I would. I thought I was prepared for Thursday. I wasn’t. I didn’t ask for a wheelchair. Why? I’m not really not sure. Getting to the end of the TSA line was rough and an agent actually lectured me about not getting a wheelchair. She was right. I spent a good 30 minutes standing with my crutches only to make it through security and have a LONG walk ahead of me to get to my gate. By the time I reached my gate, my ankles couldn’t be seen beneath the swelling, my hand ached from pushing through the crutch.

Back to my pride. Wheelchairs aren’t just sitting at the airport for show, they actually work and there are actual employees whose jobs are to push them. There is no reason I shouldn’t have asked for one and I’m disappointed that I didn’t. Please learn from me!

When my husband asked if I would go see Sturgill Simpson with him Friday night, I didn’t think about it, I chose to say yes. I found where the handicap parking was (that I didn’t even know existed) and spent the day doing the RICE thing. I had an amazing time and know how much it meant to my husband to have me with him.

Today, I’m not going to lie, I could be better, physically. But mentally, emotionally, I’m fulfilled. I’m happy. I worked, I traveled, I hugged, I cried, I laughed. I lived.

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Rheumatoid Arthritis

Progress Check

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As I’m nearing the 12 week post op mark (tomorrow!), I figured it would be a good time to share how things are going.

Quick background, I had pretty intensive knee surgery back on June 1st. I took off the day of my surgery and the day after but was back to work that following Monday, from home. I’ve been teleworking full time since.

I knew this surgery was going to have one heck of a recovery. My surgeon reminded me multiple times as did friends who had the same surgery as me. But just because I knew it would be long, didn’t mean I had fully accepted it.

Crutches for months with a full leg brace to keep it fun. I’m now down to one crutch and a smaller brace. And yesterday, I went back to the office for the first time! My surgeon is only permitting me to work two days in the office for the next few weeks. I argued this when I saw him at my last visit but he was adamant- I had to work my way back to my pre surgery activities and doing too much was going to increase my already bothersome swelling and increase my healing time.

And as much as it pains me to type this, he was right. Ugh. My work day itself wasn’t rough by any means but my knee didn’t care how easy I took things or how elevated I kept my leg all day. My swelling was crazy! My ankle was huge and my kneecap couldn’t be located amongst all of my fluid. And the pain. Whoa. It hurt.

Today I saw my physical therapist and I honestly didn’t want to go to my appointment. Before I went to work, I was moving up and down stairs with an ease I hadn’t had yet. My kneecap was actually in the shape of a kneecap! Barely any swelling and pretty easily managed pain. I had myself convinced that my work day had thrown my progress back weeks. Stairs were so hard and the swelling was still there.

I didn’t realize it but today’s PT visit was progress note day. I was super bummed out when I realized. My therapist checked the strength throughout my leg, measurements for range of motion, swelling, etc. She kept saying “great” as she measured but I assumed she was just being nice (she is SO nice by the way, I love her).

She noticed the expression on my face and asked what was wrong. I told her I felt that things were so bad and really didn’t want to know how bad my report was. She then proceeded to tell me that my range of motion was back to my post op numbers, my strength was awesome (aside from the dreaded quad lag), and my swelling wasn’t measuring bad at all. Whaaaat?!

That report was the exact reminder I needed that with a chronic illness, you can’t let one bad moment, one setback, determine the future. If I let every high blood sugar, every sharp pain, ruin my day, my week, I wouldn’t have any reason to keep pushing on.

So next time you find yourself in a rough spot, pause. This will pass. And the fight alone, is something you should be proud of. It takes one hell of a person to get up every day and battle a chronic illness.

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Rheumatoid Arthritis Type 1 Diabetes

#SAVE32MIL

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The Obamacare Repeal Reconciliation Act is projected to cause 32 million Americans to lose health coverage by 2020. We need an adequate replacement, not a repeal.

This Friday, starting at 12am EST, use #SAVE32MIL on Twitter, to share your story and why healthcare is important to you. This is a non-partisan event- every American's life is important, and each person deserves quality healthcare.

Join us for a special hour Friday evening (8pm EST), where we'll discuss how to contact your legislators and what to say to them. Be prepared to share your successes and tips in advocacy!

All of this leads up to Monday, July 24th, when you'll be fully prepared to contact your legislators and encourage them to replace not repeal.

Click here to join the Facebook event and be sure to invite as many people as possible!

We are powerful as individuals, but our voices together can really make an impact. Join the conversation on Twitter, using #SAVE32MIL, as often as you can on July 21st.

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Rheumatoid Arthritis

Book Review: The Memory of Health

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

“The Memory of Health”, by Edie Summers, is a fascinating read. As someone who has multiple autoimmune diseases and has acquired fibromyalgia as a secondary illness to my Rheumatoid Arthritis, this book really speaks to me. I see it as a piece of work that I will continue to reference for years rather than a book that is read once, not to be picked up again.

Unique Formatting

It isn’t formatted in the typical sense- chapters of simple text, which really works for this book and its content. Edie includes her journal entries which give an interesting glimpse into the author’s life and struggles with chronic illness, from her perspective. I think a lot of patients can identify with keeping a journal but I think we can also learn from Edie, that it’s important to look back at these entries and to consider sharing them. The book also includes the author’s poetry which is a welcome addition to see how ones illness and creativity come together. The journal entries and poetry are accompanied by beautiful images as well. Diet information is dispersed as well- why eating greens, avoiding meat, etc.

The way Edie uses different formats and references different topics thoughout the piece, makes this book feel like it’s giving you more than someone’s story, it’s giving you helpful information that you can use in your own healing health journey.

“Tell your story. Release your soul…”

One of my favorite themes that repeats itself through the book, is how important it is to tell your story. This is so incredibly important to me, as it should be to you. Edie shares that this book gave her a forum to share her stories whereas she had previously felt scared or that she didn’t have anyone she could share with that would understand where she was coming from.

Edie writes that the stories we tell ourselves are often different than the stories our bodies are telling us. She tells us that the story our body is telling us, is the story we need to listen to especially if you are trying to heal. We can’t see where we’ve come from if we haven’t documented every moment of the story.

The Real World is Impacting your Health

This was a really interesting section of the book for me- it covered September 11th, Agent Orange, chemical injuries, Mesothelioma, Veterans, environmental illnesses, and fragrances and how all of these chemicals in our environment are affecting our health.

Popping a pill isn’t always the answer

This section was also a good call to action for patients. A lot of people choose to self medicate before looking at other ways of managing a condition- whether it’s through lifestyle changes or nutrition. It’s important to me to have a holistic approach to my diseases- yes, medicine is absolutely required for me. I’ve also learned that some foods make my symptoms better and some make it much worse. Rest is incredibly important- and yes, it doesn’t come easy but it needs to be a priority. And, as the author points out, it’s important to weigh side effects before staring or continuing a medication. Make sure you do your own research and don’t just blindly take a pill.

If you’d like to check out some additional reviews of “The Memory of Health” please visit Amazon. But, if you’re interested in purchasing a copy for yourself, click here to purchase it at a 40% discount!

 

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Favorite Things Rheumatoid Arthritis

Review: TechCare TENS Unit, a must have for chronic pain!

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I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company.

I have a lot of products that I’ve acquired in my battle against the pain Rheumatoid Arthritis brings. Lotions, patches, creams, pills, compression braces for almost every joint in my body, and a TENS machine. Some work great, others not so much. Some were planned purchases, others acquired out of desperation (when you’re at the grocery store and your body somehow ends up in the pain relief aisle and you are looking up and down because there has to be something new).

When the opportunity to try and review the  TechCare TENS massager came up, I jumped at the chance. I already own a TENS machine- I’ve had it for almost five years. Initially it was great but as my disease progressed and my pain increased, the machine couldn’t keep up. I was maxing out intensity and not getting much relief. My physical therapist tried to order me a new one yet my insurance decided that even though I lived in Maryland and my insurance policy was Maryland based, it would only be covered if I lived in Pennsylvania. Go figure.

I’m now happy that I couldn’t get a machine through my insurance because I probably wouldn’t have tried the TENS from TechCare. The TENS unit that I absolutely adore and use daily. The TENS unit that provides me with immediate, intense relief.

So why do I love this unit? Let me count the ways:

  1. It’s rechargeable. Ahh, no batteries! And the charge lasts for multiple uses and recharges quickly.
  2. Intensity. Whoa. Going from my run of the mill TENS unit (at a comparable price as well) to this has been amazing. I have yet to use the intensity above 60% and that’s with knee pain that requires surgery this week.
  3. Can use 4 electrodes at the same time. This is awesome. I can have one set programmed to work on my extremely painful knee and have the other set massaging my calf muscle which tightens up from pain.
  4. Six massage modes- tapping, acupuncture, deep tissue, foot, cupping, or a combination.
  5. Time- my previous TENS only allowed 20 minute treatments. This allows you to dial up to 60 minutes and keep adding time as you wish.

Here’s what is included in the box:

1 controller: this unit is lightweight, painless to operate (RA has not been kind to my hands)

3 pairs of electrodes: small oval shape, medium oval, and larger rectangle; the multiple sizes are great- small ones work well on my elbow or wrist whereas the large rectangles are perfect for my legs

2 electrode cables: this enables you to use 2 sets (4 pads) at once

1 carrying bag: dark blue, drawstring, and everything, including the charger, fits inside

1 usb charger with wall adapter: easy to charge whether it’s via your computer or a regular outlet

1 electrode pad and wire holder: these are great and my only complaint would be that the kit included a total of 3; I tend to use all 3 sets of pads and have kept the plastic sheets they came with to stick the pads on when not in use

1 user manual: this leaves a bit to be desired- although it explains how to use and care for the product, it doesn’t explain the different modes in detail

1 treatment points chart: I honestly haven’t used this- it looks very similar to the charts you would see in an acupuncturist’s office; I tend to just place the pads where I’m having pain

The bottom line:

This TENS unit from TechCare is awesome, worth its low price, and a definite must have for patients with chronic pain. Interested in purchasing one of these TENS units for yourself? Check them out on Amazon:

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Rheumatoid Arthritis

Addressing Fatigue and RA

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“Snap out of it.”

“You just need a good night’s sleep.”

“Maybe if you got out of bed, you’d feel better.”

If you have fatigue, chances are you’ve heard one of these or something similar. And if you suffer from fatigue, you know that they aren’t true at all.

Chronic fatigue is more than just being tired. It’s more than needing a cup of coffee or a quick power nap. Chronic fatigue can be debilitating and if you have Rheumatoid Arthritis, there’s a good chance that you deal with it on a regular basis. If you are fortunate enough to not suffer from chronic fatigue, a good way to understand how it feels is to think of the last time you had the flu or a serious illness. You probably remember resting, trying to watch a tv show or read a book and falling asleep a few minutes in. You awoke later to feel the same, still exhausted. The rest you had didn’t provide you with any energy at all.

Before I was diagnosed with Rheumatoid Arthritis a few years ago, I found myself falling asleep while getting my hair done. Sure, getting your hair done can be a bit boring, but definitely not enough to literally put you to sleep. I remember my initial reaction being one of fear. Not fear as to why I was falling asleep but fear that if I jerked awake while getting my hair cut, I could end up with quite a messy situation!

Fast forward a few years- my disease activity has gone up and down and much like the pain in my joints, my fatigue ebbs and flows as well. The difference is, I can medicate my pain- I can put an ice pack on it, take a pill, throw on a compression brace and I will ultimately (hopefully) get some relief. Fatigue on the other hand, isn’t that simple to overcome but here are some strategies that may help you:

Talk to your doctor.

  • This is important. Your doctor needs to know how much fatigue is impacting your life- just like your joint pain or stiffness.
  • Your doctor may also want to rule out any other medical causes for your fatigue so this should be your first to-do.
  • Be sure to explain how your fatigue is different from your feelings of being tired. When I first brought up my fatigue to my rheumatologist, she asked if I was getting enough sleep, if I possibly needed a sleep study. I had to really think about how to explain the difference I was feeling- it wasn’t something that would go away with a nap or 10 hours of sleep. It was a feeling of exhaustion from simply being awake.
  • Be sure to explain how the fatigue makes you feel. For me, it was scary. The fatigue would hit so strongly that I was afraid to drive at times. Make sure your doctor knows this.

Plan your day.

  • Fatigue is disruptive. It’s important to schedule a time to rest during the day. I know that when my daughter and I run errands on Saturday mornings, as much as I want to go to the gym in the afternoon and clean the house, I must lie down after lunch. I have to. Sometimes just knowing that my nap is coming, gives me that extra boost to get through the long Target line.

Communicate.

  • This is hard one, I know. People tend to understand and empathize with pain. If you’re in too much pain to do something, that’s ok, it’s not questioned. But if you say you’re too tired? That’s not always met with the same understanding.
  • Try your best to explain to your family, friends, and coworkers how your fatigue feels, how it impacts you and even how it impacts them. I had to have conversations with my husband like those I had with my doctor. I had to explain how dangerous the fatigue made me feel and how this wasn’t something I could nap away.
  • These conversations will vary with whom you’re speaking with. My kids see being tired as needing sleep and nothing else. Adults in my family have a bit more perspective since they can see my disease as a whole but they still have told me at times to drink a caffeinated drink or go to bed earlier.
  • It’s hard to concentrate or to be in a good mood if you’re struggling to stay awake. Explain that you are a better wife, son, employee, or friend when you get the rest that your body requires. Sometimes when people hear how something impacts them, they are more likely to address the problem.

Most importantly, try your best not to feel guilty (way easier said than done, right?!) and know that you are not alone. You didn’t choose this disease and I guarantee you would give it up in a heartbeat. There are plenty of other patients, just like you, battling with fatigue each day. Make sure you share your story and what has helped you in managing your fatigue. You can also visit Joint Decisions on Facebook to find more information and resources.

 

This post was sponsored by Joint Decisions, an educational initiative developed by Janssen Biotech, Inc. that empowers people living with RA to take a more active role in the management of their disease and have more open and honest conversations with their doctors. I was compensated by Janssen for my time spent collaborating on content for Joint Decisions, however, all thoughts and opinions presented here are my own. All thoughts and opinions presented here are not the thoughts and opinions of Johnson & Johnson and should NOT be taken as medical advice.

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Rheumatoid Arthritis

How to prepare for surgery

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A year ago I had my first knee surgery and I’ll be going back into the OR in a few weeks. Thinking back to my recovery last year, I realized there are things I can do now, to make life post-surgery a bit easier. 

Refill Prescriptions 

I typically refill my meds when I’m sorting my weekly pills and realize I need more for the following week. Now, I’m refilling early (when I can) and also plan to fill up two weekly pill cases. That way I can have my regular am and pm meds sorted and not have to deal with them right away. 

Doctor’s Appointments

If you have a chronic illness or two, you most likely have a lot of apppintments. There’s a good chance that one or more of them are set right after your surgery. If you wait and try to reschedule, you may be pushed way out, if your specialists are as busy as mine. Move your appointments now. For example, my rheumatologist follow-up is 3 weeks after surgery. I already know I can’t start my next biologic until 3 months post-op. It’s also going to be difficult to assess my disease activity when I’m on post surgery pain meds, crutches, and have limited mobility. Moving my appointment a little further out keeps me from wasting my time, my copay, and it’s one less ride I need from my family. 

Make Things Accessible

Since I hoard enough insulin pump supplies to be fully prepared for the diabetes apocalypse, I have to keep everything in under the bed boxes. It’s quite difficult to reach something under your bed when you’re in a full leg brace and can’t bend down. I’ve moved a couple weeks worth of supplies into a basket on a shelf that I can easily reach. 

Practice

Last year after surgery, they wheeled me out to my mom’s waiting car. I asked them to open the passenger door. I slid my butt in and went to bring my right leg in. Fail. My mom’s seat only goes back so far and I guess her car wasn’t meant for someone who is 5’8 to keep their leg straight. I needed up having to scoot backwards into the back seat. It is a miracle that I didn’t vomit all over that car. This year, I’m going to try getting into my own car’s passenger side, before I’m heavily medicated and woozy. 

Vacation Planning

Think of when you’re planning to go away. Make sure you have your plane tickets (FMLA papers, clearance for surgery from your PCP). You make sure your favorite clothes are clean and laid out for packing (or laid out to be easily grabbed when you need them). You have the things that make the trip easier- for me, it’s vitamin c drops, chapstick, my charger, and Propel water. 

I’d love to hear your suggestions for a smooth surgery recovery, please share! 

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